Tuesday, April 27, 2010

What He Did

Bo was on TV yesterday.

Check out this link to see him.

I told his mother one of my "Make A Wish" requests is to meet Bo. Looks like I'll get to meet him in person in June.

Saturday, April 24, 2010

Penguins And Anniversaries

In the evening of the one year anniversary of my meeting the folks at MCV to discuss my stem cell transplantation, I attended this event. It was held in the Mellon Auditorium in Washington DC and as you can see in the pictures, it's a pretty amazing place. I was telling someone there that the whole thing was an "out of body" experience for me. Growing up in a rural background, I would have never envisioned myself wearing a tuxedo someday at a cool event in Washington DC that was attended by Miss America.

At the event, there were several speakers that spoke of living with HIV/AIDS. Although, medically, cancer is a different catastrophic illness, I shared a connection with the speakers. They spoke of the whispers, withholding information from others, and how they were reached out to by those who understood what they were going through.

One of the speakers last night contracted HIV as a child as a result of a blood transfusion he received due to being born as a hemophiliac. Another speaker spoke of appearing on a television talk show and being asked by the makeup person if they should throw their makeup brushes away after they used them on her for fear of infecting someone else.

I read an article in CURE magazine about a person who was diagnosed with lung cancer and one of the most asked questions she heard after revealing her diagnosis was, "Do you smoke?" As she was a non-smoker, the question had never occurred to her.

The speakers and the person in the article all expressed that once they moved beyond protecting themselves from the ignorance of their illness, they became active in getting the correct information about their illness out into the world.

They see their mission in life to be healers instead of simply being diagnosis providers.

Then he said to them, "Is it right to do good on the Sabbath day, or to do harm? Is it right to save life or to kill?"

There was a dead silence. Then Jesus, deeply hurt as he sensed their inhumanity, looked round in anger at the faces surrounding him, and said to the man, "Stretch out your hand!"

And he stretched it out, and the hand was restored as sound as the other one. The Pharisees walked straight out and discussed with Herod's party how they could have Jesus put out of the way.

Thursday, April 22, 2010

"Had I Known...." - Part 2

As a member of my high school marching band, I marched in several parades including the Fireman's and Grand Feature Parades at the Shenandoah Apple Blossom Festival in Winchester VA. They always had celebrities in attendance and in 1975, I was able to obtain the autographs of Colonel Sanders (who was sitting in a hotel lobby surrounded by beauty queens when I approached him for his autograph) and Randy White. They were the first celebrities I ever met.

I found out when I am in San Diego there will be a celebrity in attendance at that event. I received the itinerary for the event on the 13th and posted it below. You will see who the celebrity is.

4:30-5:30 pm Dress Rehearsal (all parties dressed for event—cocktail attire, suits, pretty much anything but jeans!)
5:30-6:00 pm Meet & Greet for Finalists (and guests)/Ann Jillian/CURE staff in CURE Office (Chicago Room adjacent to the Marriott Hall)
6:00-6:30 pm Doors Open
6:30 pm Event Begins, Welcome and Intro by CURE’s Kathy LaTour
6:40-6:55 pm Honorary Mistress of Ceremonies, Ann Jillian
6:55-7:20 pm Reading of Finalist Essays
7:20-7:25 pm COBI Representative to Award Winner
7:25-7:35 pm Performance by Ann Jillian (accompanied by pianist)
7:35 pm Program closes/Food and drink begin
7:40-8:30 pm Photos with Ann Jillian and finalists, COBI staff, attendees

Yup, I'm pretty excited.

Ann Jillian - she's pretty.

Wednesday, April 21, 2010

"It's A Major Award"

Well, maybe I guess.

"Cure" Magazine (a magazine I highly recommend for anyone going through the cancer experience - be it a patient or a caregiver) sponsors an annual "Extraordinary Healer Award" that will be presented this year at the Oncology Nursing Society’s 35th Annual Congress in San Diego on May 13th-16th.

You can go here to get details.

See any names you recognize?

They called me today from their offices and notified me. On the other end of the phone, as part of a three way conversation, was my honoree. I am very humbled and excited that my essay was selected as a finalist. Most of all, I am excited for the person I nominated. I will tell you that I encountered many great people in the process. They have all been golden. Annette was the gold standard.

I am waiting for the details of the travel itinerary, etc., but they said that I would be flying out on the morning of the 13th, attending the ceremony on the evening of the 13th and then I have the day to myself on the 14th. I think I would be flying back on the 15th. Folks have recommended that I stay a little longer, and that's a great idea, but logistics prohibit it.

As far as posting the essay here, I want to make sure it is permitted for me to "publish" it and also, I'm not sure that Annette has seen it yet, so I want to keep it under wraps until May 13.

When the folks at "Cure" asked me if I was excited, I told them, "One day after a chemo treatment, one of the chemo nurses gave me a big hug before I left the treatment room. I looked at another patient in the room and said, 'If I knew life was going to be this good with cancer, I would have done it a long time ago.' A trip to San Diego is even more icing on the cake!"

That's my humor.

Monday, April 19, 2010

Something's Coming...

Working on a post about emotions and dealing with them while in remission. I want to make sure I say what I need to say, correctly. So, it will take a little time to finish it.

Meanwhile, another friend is dealing with her own issues. She may have some pretty involved surgery. Tomorrow, she goes for some scans; an Octreotide Scan (I just learned what that was today) to be exact. To date, there has been no talk of cancer in her body and I suspect the doctor is being cautious, but it's all a big deal physically and mentally. She'll handle it with courage, resolve, grace and humor.

"Let me say something about that word: miracle. For too long it's been used to characterize things or events that, though pleasant, are entirely normal. Peeping chicks at Easter time, spring generally, a clear sunrise after an overcast week - a miracle, people say, as if they've been educated from greeting cards. I'm sorry, but nope. Such things are worth our notice every day of the week, but to call them miracles evaporates the strength of the word. Real miracles bother people, like strange sudden pains unknown in medical literature. It's true: They rebut every rule all we good citizens take comfort in. Lazarus obeying order and climbing up out of the grave - now there's a miracle, and you can bet it upset a lot of folks who were standing around at the time When a person dies, the earth is generally unwilling to cough him back up. A miracle contradicts the will of the earth. My sister, Swede, who often sees to the nub, offered this: People fear miracles because they fear being changed - though ignoring them will change you also. Swede said another thing, too, and it rang in me like a bell: No miracle happens without a witness. Someone to declare, Here's what I saw. Here's how it went. Make of it what you will."
— Leif Enger (Peace Like A River)

Sunday, April 11, 2010

Slowly We Turn...

The most asked question I hear (and ask myself) these days is, "What would you do if you had a relapse?" My latest response has been, "It depends on what day you ask me."

In lighter moments, I have responded that I would explore a "cash option" with the insurance company. I doubt that's an option.

What I have concluded is this. It would be a sign of total disrespect to those who have helped or supported me in any way, to not discuss further treatment options if necessary. To not want to continue with treatment would be a statement that their efforts to date were unappreciated.

Now that I have a better understanding of treatments, processes, etc., I would take my time and be more in depth with research and questions of what was ahead of me. I would evaluate treatment side effects, success rates, and future physical impact of any treatments I have received to date and those that would be ahead of me. I would then assemble all of that information and present it to a close circle of "advisers" to seek professional, personal and spiritual input. Then, I would make decisions. The final decision needs to rest with the patient.

Most likely, when you have had a discussion about a person going through treatment for cancer, you have heard the expression, "They have their good days and they have their bad days," in regards to their physical status. That same statement also applies to their mental status during and after treatment. The trick is to increase the gaps between the bad days.

Know that by posting this, I'm not trying to prepare you for anything that is looming. I'm simply posting my thoughts about a question I've been asked with frequency and sometimes have not responded well when asked.

That's how it works.

Wednesday, April 7, 2010

It's Not All About Me

When I started this blog, truthfully, it was all about me. It was about me wanting to let you know what was going on. It was a way to not have to spend all day on the phone relating what was going on (By the way, I'm finding out from others that maybe I wasn't such a jerk after all by initially saying, "I vant to be left alone." I've heard the same from others who have since been diagnosed after me. I've told them I had the same sentiment, then I opened up the doors again and let people in.).

I remember a friend posting a comment on the blog early on about how I was putting up signposts about how to progress through the process. I hoped there was something that helped.

Here's what's going on now. Medically - zilch. Mentally - a lot of information seeking for just about anything having to do with what I experienced. I've found information about drugs, treatments, survival rates, warning signs, etc. I've even looked for pictures of NHL tumors. Crazy.

Tonight, I found this website about Bone Marrow Transplants. It's an "official" site, so feel free to explore. I signed up to be a Bone Marrow donor back when I was donating platelets. I proudly carried my official membership card in my wallet. After I was diagnosed, I had to contact the organization and let them know that I was no longer available to be a donor. But here's the good news. The horror stories you may have heard about bone marrow donations and the pain and suffering.....there's an alternative. You can also donate stem cells via peripheral blood stem cells. The information about how to do it is contained in the web site I listed earlier in this paragraph. Also on the website, is a page to sign yourself up.

The misconception having to pay to donate umbilical cord blood is also addressed on the web site ("..you could donate your baby’s umbilical cord blood to a public bank at no cost to you...The cells in cord blood are not embryonic stem cells.")

Go for it. This is about you.